Beyond the cookie cutter

The Stu­dent Voice Prize Com­pe­ti­tion of 2021 had more med­ical stu­dents apply than last year. There­fore I was in the extreme­ly for­tu­nate posi­tion to not only be paired with one but two med­ical stu­dents, Rachel and Jas­mine. They had to write an essay based on one of three ques­tions. Shout out to Philip­pa at Rare Bea­con (for­mer Find­acure)! She coor­di­nat­ed and made sure no stu­dent was turned away from this oppor­tu­ni­ty to learn about a rare con­di­tion — one thing is for sure, she had her work cut out for her. 

What is the Stu­dent Voice Prize? Click on the image

I am grate­ful to you, Rachel, for the oppor­tu­ni­ty to share my sto­ry and ‘cook­ie cut­ter’ expe­ri­ences with you. It means a lot know­ing that young aspir­ing doc­tors, like your­self, show an inter­est and will­ing­ness to learn more about rare dis­eases. I am proud, I get to share your essay on my blog! Thank you for tak­ing the time and expand­ing your orig­i­nal essay after the stu­dent voice prize com­pe­ti­tion was over. I wish you all the best for your future endeav­ours and hope we will stay in con­tact.
- Jen­nifer

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This essay has been edit­ed since being sub­mit­ted to the Stu­dent Voice Prize 2021.

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Abstract

This arti­cle describes the expe­ri­ences and chal­lenges of J, a patient who lives with an extreme­ly rare dis­ease called Car­ney Com­plex. From receiv­ing a diag­no­sis to learn­ing to live with her con­di­tion, it explores the spe­cif­ic obsta­cles that J has faced as a result of her per­son­al cir­cum­stances. This arti­cle also explores how cur­rent prac­tis­es and struc­tures with­in ‘cook­ie-cut­ter’ approach­es to health­care result in greater dis­ad­van­tages for patients with inter­sect­ing iden­ti­ties — such as race, wealth, gen­der, and oth­er char­ac­ter­is­tics — both in health­care and in gen­er­al soci­ety, par­tic­u­lar­ly when these fac­tors over­lap with one anoth­er. Through con­sid­er­ing the inequal­i­ties that patients with rare dis­eases, such as J and oth­ers face and how these may be exac­er­bat­ed by their vary­ing iden­ti­ties, this arti­cle aims to recog­nise the unique expe­ri­ences of each per­son and patient and thus fur­ther high­light the need for holis­tic patient-cen­tred care with­in struc­tures that may oth­er­wise give rise to inequality.

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BEYOND THE COOKIE-CUTTER APPROACH: 

RARE DISEASES AND INTERSECTIONALITY

by Rachel Lee

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Inter­sec­tion­al­i­ty is a mul­ti­di­men­sion­al research approach that can be used to high­light how inter­ac­tions between social cat­e­gories — includ­ing race, eth­nic­i­ty, and gen­der — affect our under­stand­ing of health inequal­i­ties and dif­fer­ent patients’ experiences. 

Con­verse­ly, the ‘cook­ie-cut­ter’ approach describes the gener­ic process­es used to con­fine unique indi­vid­u­als into indis­tinct groups. This can be seen when health­care pro­fes­sion­als fail to acknowl­edge the pos­si­bil­i­ty of a rare dis­ease in patients’ first pre­sen­ta­tions, or when peo­ple neglect oth­ers’ inter­sec­tion­al­i­ties and expect patients with rare dis­eases to live lives iden­ti­cal to those with­out a rare dis­ease, thus over­look­ing their unique cir­cum­stances and needs.

I had the priv­i­lege of speak­ing with J, a lady in her mid-thir­ties who lives with Car­ney Com­plex (CNC) and found­ed the Car­ney Com­plex Com­mu­ni­ty, a sup­port group for peo­ple liv­ing with CNC. This arti­cle aims to explore the chal­lenges that J has expe­ri­enced dur­ing her rare dis­ease jour­ney through a lens that con­sid­ers both her inter­sec­tion­al iden­ti­ties as well as those of oth­er rare dis­ease patients. In doing so, I hope that this arti­cle will help spark dis­cus­sions about the unique needs of patients with rare dis­eases and the fac­tors that should be con­sid­ered to ensure health­care pro­fes­sion­als pro­vide the best care possible.

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What is Carney Complex? 

CNC is an extreme­ly rare con­di­tion that was first described by Dr J. Aidan Car­ney in 1980¹. Approx­i­mate­ly 750 cas­es have been report­ed world­wide, but the preva­lence remains unknown². Patients can be affect­ed by mul­ti­ple endocrine tumours, non-endocrine tumours such as car­diac myx­o­mas, and pig­ment­ed lesions of the skin and mucosa that occur through­out life³. Approx­i­mate­ly 70% of cas­es are due to auto­so­mal dom­i­nant muta­tions of the PRKAR1A gene, which J’s genet­ic tests con­firmed in 1999, how­ev­er CNC can also occur spo­rad­i­cal­ly³.

At present, CNC is con­sid­ered a het­eroge­nous dis­or­der and does not have a cure, and as such reg­u­lar screen­ings for man­i­fes­ta­tions of the dis­ease, includ­ing poten­tial­ly life-threat­en­ing tumours and car­diac myx­o­mas, are cru­cial².

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How CNC and the ‘cookie-cutter approach affects J’s life

Gender

“They don’t believe my ver­sion of the story”

When J gained weight dur­ing her teenage years, she had dif­fi­cul­ties los­ing the weight after­wards. J approached sev­er­al health­care pro­fes­sion­als about her con­cerns, many of whom unhelp­ful. One staff mem­ber even accused J of “doing it to get atten­tion” when in fact her weight gain was lat­er attrib­uted to Cushing’s syn­drome sec­ondary to her CNC. J’s weight gain was a symp­tom of a med­ical con­di­tion, and yet med­ical pro­fes­sion­als did not believe what she said. This is where the cook­ie cut­ter approach failed her.

Although women are more proac­tive than men in access­ing pri­ma­ry care and report more severe and fre­quent lev­els of pain, they also face greater stig­ma when seek­ing med­ical help^4,5. With­in health­care set­tings, women are per­ceived to be more sen­si­tive and hys­ter­i­cal, are less believed by health­care pro­fes­sion­als, and are less like­ly to be giv­en pain relief^5,6. Unfor­tu­nate­ly, this phe­nom­e­non is no dif­fer­ent with­in the rare dis­ease com­mu­ni­ty, where J’s expe­ri­ence high­lights one exam­ple of the gen­der bias patients often expe­ri­ence. As a result, female patients expe­ri­ence vast dis­par­i­ties in the time­li­ness and qual­i­ty of their diag­noses and treat­ments, which may help explain why female patients with rare dis­eases report a low­er health-relat­ed qual­i­ty of life com­pared to their male coun­ter­parts^4,7.

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Race: cookie cutters in physical appearance 

Pre­vi­ous stud­ies have shown that racial and eth­nic minor­i­ty groups suf­fer from worse health out­comes and less access to health­care ser­vices⁸. In the con­text of rare dis­eases, where patients already have lim­it­ed access to appro­pri­ate health­care ser­vices, com­ing from a racial or eth­nic minor­i­ty groups only ampli­fies health inequal­i­ties. Although this was not expe­ri­enced by J due to her Cau­casian back­ground, it is pos­si­ble that there remain patients with CNC with dark­er skin tones who have yet to be diag­nosed mere­ly because they do not present with the ‘expect­ed’ pig­men­ta­tion. While the het­ero­gene­ity of skin pig­men­ta­tions with­in CNC has been pre­vi­ous­ly stud­ied, more research is need­ed to explore how skin pig­men­ta­tion in CNC patients may present dif­fer­ent­ly in dark­er skin tones⁹. This speaks to a larg­er need with­in health­care: to erase the cur­rent ‘cook­ie cut­ter’ Euro­cen­tric focus with­in der­ma­tol­ogy so that the spe­cial­ty bet­ter reflects the diverse peo­ple it serves.

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Invisible illness: A social cookie cutter?

“I have an invis­i­ble illness.”

One mem­ber of the CNC com­mu­ni­ty had their diag­no­sis delayed by 11 years because they did not present with the pig­men­ta­tion doc­tors ‘expect­ed’¹⁰. Talk­ing to J revealed that, despite the research that has been car­ried out over the last 35 years, there remain a lot of mis­con­cep­tions about CNC¹¹. With­in the health­care com­mu­ni­ty, hav­ing non-spe­cif­ic symp­toms, vari­a­tions in patients’ pre­sen­ta­tions, and an inabil­i­ty to see any­thing ‘phys­i­cal­ly’ wrong with a patient at first glance can lead to delays in diag­no­sis. This is espe­cial­ly com­mon in rare con­di­tions such as CNC, where patients often expe­ri­ence long diag­nos­tic odysseys before final­ly find­ing an answer.

The dif­fi­cul­ties of hav­ing an invis­i­ble ill­ness con­tin­ue long after patients receive a diag­no­sis. “You look at me and you don’t think I’m sick or that my many surg­eries have left me hand­i­caped. I can’t do every­thing I should be able to do at my age.”, J told me. The myx­o­mas and tumours often seen in CNC man­i­fests inside the body and are not vis­i­ble to the naked eye. Many peo­ple in J’s social cir­cles, from friends and fam­i­ly to peers and col­leagues, have a hard time under­stand­ing J’s expe­ri­ences with CNC, per­haps in part because they can­not phys­i­cal­ly see it. Her surgery scars are cov­ered by her cloth­ing. Invis­i­ble ill­ness­es are just as real and valid as dis­eases that can be seen; patients’ suf­fer­ing and hard­ships must be tak­en equal­ly seri­ous­ly regard­less of whether they ‘look’ ill or not.

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The paediatric patient: the cookie cutter of age

“I always felt like I was not includ­ed in the dis­cus­sions… I just felt unheard.”

As a child, J, whose broth­er and moth­er also have CNC, encoun­tered many dif­fi­cul­ties liv­ing with the con­di­tion. When recall­ing her child­hood expe­ri­ences of con­sul­ta­tions with doc­tors and her par­ents, J often felt dis­re­gard­ed — “I always felt like doc­tors wouldn’t include me in the dis­cus­sions.” Despite this, J feels for­tu­nate to have a mom who used to work in research. “My mom always made sure to explain to me what had been dis­cussed and what was going to hap­pen next. She was a very impor­tant pil­lar of sup­port.” Although par­ents and doc­tors make deci­sions based on what they believe to be the child’s best inter­ests, iron­i­cal­ly this some­times means that con­sult­ing the child them­selves — the very per­son whom these deci­sions are about — is overlooked. 

Con­se­quent­ly, this can leave pae­di­atric patients feel­ing pow­er­less and makes patients’ tran­si­tions from the well-coor­di­nat­ed pae­di­atric ser­vices to far less coor­di­nat­ed adult care even more dif­fi­cult. For J, switch­ing from pae­di­atric to adult med­i­cine was a “night­mare” that left her feel­ing “lost and over­whelmed”. As rare dis­ease treat­ments improve and patients with rare dis­eases live longer lives, improved com­mu­ni­ca­tion dur­ing the tran­si­tion from pae­di­atric to adult med­ical ser­vices is only going to become more important.

J revealed: “At age 15, that pil­lar of sup­port crum­bled away when my mom had sev­er­al severe strokes and near­ly died from a sec­ond car­diac myx­o­ma. She was ren­dered dis­abled. Her sec­ond myx­o­ma was missed because her car­di­ol­o­gist at the time thought that the screen­ing rec­om­men­da­tions of the CNC experts were too exces­sive. Instead of bi-annu­al car­diac screen­ings to catch any reoc­cur­rences ear­ly, she went in only once a year. For a very long time we as a fam­i­ly were just bare­ly hold­ing on. My dad – under­stand­ably over­whelmed – did his best to keep us going, but it was hard to fill the roles my mom had tak­en on. I took respon­si­bil­i­ty for my screen­ings, but my mom tried to be there for them as often as she could, as well as mak­ing sure my younger broth­er got the screen­ings he needed.”

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Location

In con­trast to com­mon med­ical con­di­tions, CNC is incred­i­bly rare, which means there are only a small num­ber of CNC spe­cial­ists world­wide and access to expert knowl­edge is extreme­ly dif­fi­cult. Only 750 cas­es of CNC – 1 in 10 mil­lion peo­ple – have been con­firmed world­wide, mean­ing it is extreme­ly dif­fi­cult for peo­ple with CNC to find oth­ers they relate to². The online CNC Com­mu­ni­ty has grown to encom­pass­es just over 200 peo­ple who can com­mu­ni­cate, share infor­ma­tion, and con­nect in a world where they might oth­er­wise feel alone, iso­lat­ed, and invis­i­ble¹².

Nonethe­less, giv­en that patients come from dozens of dif­fer­ent coun­tries, lan­guage bar­ri­ers still pose a large issue with­in the CNC com­mu­ni­ty. J told me about an Ital­ian gen­tle­man try­ing to get a diag­no­sis, who had to use Google Trans­late to com­mu­ni­cate with their online com­mu­ni­ty. Although the oth­er CNC mem­bers were eager to help, the Ital­ian gen­tle­man strug­gled to under­stand much of the infor­ma­tion shared because research is gen­er­al­ly pub­lished in Eng­lish. “Every­body tried their best to help, but it’s been hard to share research,” revealed J.

Geog­ra­phy is anoth­er fac­tor that affects how eas­i­ly rare dis­ease patients are treat­ed. Based in Europe, J con­sid­ers her­self extreme­ly for­tu­nate that she can under­go all her screen­ings in just one hos­pi­tal locat­ed with­in walk­ing dis­tance from her home. Patients with CNC have to fre­quent­ly attend mul­ti­ple con­sul­ta­tions locat­ed far away from each oth­er; anoth­er patient J met through the CNC Com­mu­ni­ty attends screen­ings in five dif­fer­ent hos­pi­tals spread across the UK¹³. Although these med­ical appoint­ments are essen­tial, trav­el­ling such far dis­tances on a reg­u­lar basis can pose a large finan­cial and time bur­den on patients, adding anoth­er lay­er of dif­fi­cul­ty to patients’ lives. Patients with CNC have vast­ly dif­fer­ent expe­ri­ences with their dis­ease depend­ing on their loca­tion, which is anoth­er exam­ple of how the cook­ie cut­ter approach to a dis­ease fails. Regard­less of their lan­guage or coun­try, all patients deserve equal access to infor­ma­tion and services.

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The working professional: occupational cookie cutters

“There is only a small spec­trum of choic­es that you can make.”

In a 2017 EURODIS-Rare Dis­ease Europe sur­vey, 76% of respon­dents report­ed that hav­ing a rare dis­ease lim­it­ed their pro­fes­sion­al choic­es¹⁴. For J, this state­ment res­onates pro­found­ly. Her schools and employ­ers expect­ed her to arrange med­ical appoint­ments before or after work­ing hours, yet she also need­ed to be flex­i­ble to the avail­abil­i­ties of her six dif­fer­ent spe­cial­ists and med­ical appoint­ments; she often found her­self at a cross­roads hav­ing to choose between her work or her health. A mould was forced over J that dis­re­gard­ed the unique cir­cum­stances that make her so dif­fer­ent from oth­er work­ing pro­fes­sion­als. As a result, J no longer works full-time and instead receives dis­abil­i­ty pay from the gov­ern­ment to sup­port her­self. Flex­i­ble employ­ment prac­tis­es remain a seri­ous unmet need for peo­ple with rare dis­eases¹⁴.

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Mental health and wellbeing

“It upheaves every­thing for me… it’s like you just can’t catch a break. It’s never-ending.”

Being diag­nosed with CNC turned life upside down for J. In the span of just five years, J, and her moth­er had four emer­gency surg­eries between them, equat­ing to almost one life-threat­en­ing surgery every year. This left J and her fam­i­ly with no time to recov­er from major oper­a­tions before being flung right back into the tumul­tuous maze of emer­gency med­ical appoint­ments again.

“As soon as we thought we had man­aged to put out one fire, anoth­er one had already ignit­ed, unno­ticed, and the next emer­gency surgery was need­ed. Try­ing to deal with ‘fires’ when they’ve had time to burn unno­ticed, with no way to catch them ear­ly, was incred­i­bly dif­fi­cult and tax­ing…¹⁵ With every surgery, it has been more and more dif­fi­cult to find my foot­ing again in society.”

Beyond the effects on her phys­i­cal health, CNC has had a large impact on J’s men­tal health. Every doctor’s appoint­ment was filled with the anx­i­ety and dread of the news she might receive after­wards¹⁶. Every new sign or symp­tom that J expe­ri­enced even­tu­al­ly need­ed major surgery. Every surgery was a rag­ing fire that demand­ed to be put out, bring­ing her family’s lives to a full stop and tak­ing months to recov­er from both phys­i­cal­ly and mentally.

Refer­ring to her men­tal health, J shared that “it’s still some­thing we do not talk enough about in the Rare Com­mu­ni­ty. There is so much stig­ma attached to it: you don’t want to appear weak.”

J is keen to break the stig­ma attached to men­tal ill­ness­es and open­ly shared how the stress­es, scares, and shocks of her ill­ness affect her men­tal health. Since just 15 years old, she has bat­tled with depres­sion and post-trau­mat­ic stress in addi­tion to CNC. Peo­ple liv­ing with rare dis­eases are three times more like­ly to report being unhap­py and depressed com­pared to the gen­er­al pop­u­la­tion, and as such it is essen­tial that we also sup­port patients’ men­tal health when car­ing for them¹⁴. Unfor­tu­nate­ly, this is some­thing that is not acknowl­edged enough through the cook­ie cut­ter approach. For J, talk­ing to a psy­chol­o­gist and meet­ing oth­er peo­ple with CNC has had an instru­men­tal role in help­ing her pro­cess­ing her experiences.

If any­thing, it was in being vul­ner­a­ble and acknowl­edg­ing her men­tal health strug­gles that J’s strength, resilience, and brav­ery shined the bright­est. I am incred­i­bly grate­ful that J shared this with me, and I hope that through writ­ing about men­tal health we can help oth­ers suf­fer­ing from a rare dis­ease to realise their feel­ings are valid, and they are not alone in their journey.

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Overlapping intersectionalities

“Will I still be the J that I was before?”

Among patients with rare dis­eases, the inter­sec­tion­al­i­ty between gen­der, race, age, occu­pa­tion, lan­guage, and geog­ra­phy remains a blur­ry cross­road that gives rise to unique men­tal and phys­i­cal hur­dles in health­care set­tings, at work, and in people’s per­son­al lives. Through this essay, I hope I have giv­en you a bet­ter idea of the effects of liv­ing with a rare dis­ease on people’s phys­i­cal and men­tal health. Most impor­tant­ly, the seri­ous effects of a rare dis­ease on people’s men­tal health, need to be acknowl­edged more. There is an urgent need to look beyond the cook­ie cutter.

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Conclusion: looking beyond the cookie cutter

“All you have is a cook­ie cut­ter that you put over me.”

Despite the chal­lenges and health scares J has expe­ri­enced, I was struck by the calm­ness, hope, and resilience she radi­at­ed. Not only is J cur­rent­ly writ­ing a com­ic book, but she also cre­at­ed an online com­mu­ni­ty to con­nect peo­ple liv­ing with CNC. Her plat­form fights for change and improve­ments to the rare dis­ease expe­ri­ence dai­ly. It chal­lenges the cook­ie cut­ter approach often imposed on patients. This has become an invalu­able plat­form for patients liv­ing with CNC, and oth­er rare dis­eases to share their expe­ri­ences and find peo­ple who under­stand their experiences.

How can we create healthcare systems that better reflect the unique individuals behind these diseases? 

Advo­cat­ing for change is a bur­den that can­not lie sole­ly on patients. Instead of plac­ing cook­ie cut­ters over patients with rare dis­eases and adopt­ing a ‘one size fits all’ approach, we need to acknowl­edge the spe­cif­ic chal­lenges that patients from diverse and inter­sect­ing iden­ti­ties face. Through trans­for­ma­tion­al changes with­in sys­tems, cul­tures, and indi­vid­u­als, we can help peo­ple like J live longer, health­i­er, and hap­pi­er lives.

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References

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15. J. (2021). Jen­nifer­’s Fam­i­ly odyssey — Fam­i­ly med­cial his­to­ry not con­sid­ered. Car­ney Com­plex Com­mu­ni­ty. https://www.carney-complex.org/diagnosis/delayed-diagnosis/diagnosis-odysseys/jennifers-family-odyssey/
    
    
16. J. (2021). It’s part of me; I choose joy — heart screen­ing for car­diac myx­o­mas. Car­ney Com­plex Blog. https://itspartofme.carney-complex.org/2021/04/24/heart-screening-for-cardiac-myxomas/